FA

[Sammy418]

My husband has had Freidreichs Ataxia for over 30years, we have been able to live a good life, nice holidays and general he has had good health. But in the last 6 months he has gone down hill really quickly. He has a pump fitted under the skin to give him balcofen (sorry can’t spell this) which has stopped all his muscle spasms and reduce his stiff legs. But after having a minor operation to change this pump, he has very bad spasms and his legs are that stiff he can’t sit in his wheelchair because he can’t mend his legs.

I just what to no if anyone else has experience anything like this, the doctors at JR in Oxford don’t ready no why this is happening. They have put up his drug dose by 30% but this hasn’t really made much difference.

Life is really hard at the moment as I am the main Carer and struggling because I can’t even leave him on his own, in case he slides out of his armchair.

Would love to here from anyone, many thanks Sharon

[Litty]

So sorry to hear that. Unfortunately we all seem to have bad phases and HOPEFULLY he will pick up again. I have CA but Baclofen did not help me x

[wobblybee]

Hi Sharon 🙂

You could type Friedreichs Ataxia in the search box, and scroll through discussions to see if any post looks related.

There are Ataxia Support Groups on Facebook, I’ve seen posts about FA. You might find someone coping with a similar situation.

It must be very stressful and frustrating for both of you 🙂 xBeryl

[Sammy418 in reply to wobblybee]

Thankyou xx

[RCBrownMBE]

Hi Sammy, I'm in a very similar situation to you, although I have had FA for 27 years. I am married with two young children. I know it wasn't really what you were looking for in your post, but if you ever wanted to talk to someone who might understand...

Also, you mention the JR in your post - there is an AtaxiaUK support group in Oxford which again, could give you some support and friendship.

Richard

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[Divz_363]

therez a tablet for friedrich ataxia called Norwayz idebenone 45mg. you can try it.